Publicatie

Publication date

‘Wat als ik het niet meer kan?’ Een kwalitatief onderzoek onder naasten van mensen met een beperking en een intensieve zorg en ondersteuningsbehoefte.

Boeije, H., Schelven, F. van, Leemrijse, C. ‘Wat als ik het niet meer kan?’ Een kwalitatief onderzoek onder naasten van mensen met een beperking en een intensieve zorg en ondersteuningsbehoefte. NTZ: Nederlands Tijdschrift voor de Zorg aan mensen met verstandelijke beperkingen: 2022, 48(1), p. 10 p..
Read online
Aim
Relatives who provide intensive care and support to a family member with a disability sometimes need or wish to (temporarily) share or transfer their tasks. Thinking about this in advance and making agreements can prevent decisions having to be made under high pressure in crisis situations. In this article we examine the barriers that relatives experience to think about this, their experiences with conversations about this and the matters that they would like to arrange.

Method
Sixteen semi-structured interviews were conducted with a varied group of relatives of people with a mental or other disability. The interviews have been thematically analysed.

Results
Relatives experience barriers to talk about taking over their role in the short or long term. They often do not know where to start. Relatives find it important to properly arrange housing and care and also look for people they trust and who will look after their family members with a disability. The relatives who have made agreements about this experience more peace of mind.

Conclusion and discussion
Many relatives are concerned with handing over (part of) their tasks, but not everyone takes concrete steps. Relatives find it difficult to approach authorities and people in their social network who they can entrust the care to. Based on the results of this study a digital tool will be developed. This tool enables relatives and other stakeholders, such as policy makers, care providers and organisations of relatives, to look for solutions.